Today is Pregnancy and Infant Loss Remembrance Day and we're sharing Eva Allegretti's real-life mom moment through her current, heartbreaking pregnancy and her mission to help others while sharing her son Riley’s story to carry on his legacy.
It’s one thing to talk about these real moments and try to raise awareness as a company and it’s entirely different to experience it first-hand. We want to acknowledge how lonely and isolating it can be to go through the devastating news and tragic loss, but it certainly may help to let others know they are not alone. Our hearts go out to Eva, and her family, and this is her story.
Tuesday September 2, I went into the maternal fetal medicine office for a more detailed anatomy scan to rule out any possible heart problems he may have had since his heart rate was slightly elevated in the first trimester but had since gone back to normal range. I tried to cancel the appointment since his heart rate went down but was urged just to take a look and rule it all out since their ultrasound machines can view a much clearer picture of such a small baby. I was happy and just saw his little profile a few weeks prior with my husband.
I went alone, since I didn’t have any worries. I saw his little feet, legs, toes, tummy, hands (covering his face of course), his little heart beating within the normal range of 163, and towards the end we caught little glimpses of his face since he wouldn’t move his little hands. There he was kicking around making me laugh as the tech got measurements. As soon as she was done, she walked out and told me to hang tight for the doctor. I grabbed my phone and texted the babysitter and Zach that everything was measured and looks great (to me) and I’ll be heading home shortly.
I couldn’t have been more wrong.
I had an appointment with a Dr. Crockett, but then Dr. Eichelberger walked in (the chair of the board) along with the tech who did my ultrasound and the genetics counselor.
She introduced herself and my initial thought was, maybe the doctors changed up their schedules. She asked if I was there alone, again, not a big question because the receptionist asked the same. I said yes, I was alone. My heart began to sink as she asked me if I could get my husband on the phone as she had devastating news. I started shaking barely able to find the buttons to press to get to him, not to mention the tears beginning to flood my eyes.
Dr. E: “I have some very difficult news. Have you named this baby boy?”
Dr. E: “Riley has many concerning anatomical developments that are consistent with trisomy 13”
Right then, I was prepared for a life of taking care of my baby who will need extra help, but I’m not a doctor, I didn’t know what that exactly meant until my husband asked over the phone; “what is the life expectancy we are looking at?” (he is a family medicine physician and anticipated what was going to be said next).
The genetics counselor explained with trisomy 13 and all of his other underdevelopment he likely won’t make a full-term pregnancy. If he does, he may not survive anything more than a few hours or days with him.
This genetic diagnosis has nothing to do with what I could have done to prevent it. This is in less than 0.2% of pregnancies as it happens right at conception as chromosome pairs match from mom and dad. Along with the diagnosis of full trisomy 13 (confirmed with an amniocentesis) he has holoprosencephaly (HPE) and hypoplastic left heart syndrome (HLHS). While some babies with trisomy 13 can live a few days, weeks, months or even years; our baby boy’s heart is not strong enough to survive on its own. His HPE puts him at a risk where his brain may not tell him to start breathing on his own when he is born or possibly have a seizure. All of that aside, the NICU cardiologist said that he is not a candidate for any type of surgery to correct his heart because of the other anomalies. However, we could give him a medication to prolong his life by a few more days, but that medication puts him at risk to stop breathing and in the NICU attached to monitors and IVs making it difficult to hold him in our arms.
Our goal ultimately became comfort care so that we could hold him in our arms for however long we get to be with him, completely pain free and bonding to us.
Every time I think it becomes a little bit easier to talk about, I find myself drowning in emotions and tears. I have had so many mothers reach out to me opening up about their story both with trisomy 13 as well as other life-threatening diagnoses of their babies.
My family and I want to create as many memories as possible and share Riley’s story to carry on his legacy with all the time we have with him. We want other moms and parents going through any degree of difficult news to know that they’re not alone.
To read more about Riley and the Allegretti family, click here.
If you would like to donate to Eva's NICU, please visit www.selfregionalfoundation.org, click “Donate now”, then select Designation: *Nancy Moore Thurmond Memorial (NICU)*. You can also reach out via phone by dialing 864-725-4256 and speak to Lisa Bishop, at the Self Regional Foundation.
*Please note, this blog post does discuss sensitive topics that may make some people feel uncomfortable, cause trigger flashbacks or ruminating. Although this testimonial is a truthful statement, the content within this blog post is for informational purposes only. The information contained on this Website is not intended as, and shall not be understood or construed as, professional or medical advice.